Starting university while living with myasthenia gravis – particularly if you’ve been recently diagnosed – can make the college experience quite different from that of your peers without health challenges.
MG can affect people of any age, including teens and young adults. Some students may begin college already managing MG symptoms, while others might receive their diagnosis while in the midst of university life.
Nick’s college journey with MG
Nick Mo was diagnosed in the summer before he moved from the West Coast to New York City for his freshman year. While he had experienced double vision during high school, he brushed the symptom off as fatigue from stress.
“Being diagnosed with a completely new disease and having had to deal with the numerous side effects from medicine made the first two months of college in New York really difficult,” he shares.
“I was away from family and friends, and it was a completely new culture and atmosphere. It was a stressful experience, but I knew I just had to trudge on, just continue with my life and my time in college.”
Unfortunately, Nick experienced an escalation of his symptoms in his third month at school.
“I started having weakness in my fingers and hands to the point that typing was difficult. I remember I was typing an essay for a class, and my fingers just wouldn’t move anymore.”
Nick’s neurologist sent him to the emergency department for treatment.
“This was four nights before my midterm exam on organic chemistry. They gave me an intravenous immune globulin (IVIG) bolus, and I stayed the night at the hospital. I vividly remember having my chemistry textbook open in front of me while getting this treatment. (All this studying was not wasted, however; I passed my exam!)”
Every four weeks, Nick would return to the hospital for IVIG, which came with a severe headache that knocked him out for at least a day after treatment but resolved many of his MG symptoms.
“Amazingly – and I take pride in this – I was still able to conquer my schoolwork. It took a lot of planning, a lot of emailing professors, ‘I have this condition; if you can help me manage through, that’d be great.’ I was also fortunate to have a good family and friend support system.”
Nick also joined the local MGFA support group in New York City. He deeply appreciated the advice and inspiration from lead Sue Klinger, as well as the opportunity to both listen and share in the meetings.
“In a way, the support group gave us a ‘third space’ away from home and work to talk freely about how we’ve been impacted by this condition.”
Nick had a thymectomy during college and slowly tapered down his treatments; the procedure put him into MG remission.
Nick not only finished his undergraduate degree but also medical school, and today is an intern at an academic medical center.
Advice from the MG Community
Nick is not the only one who’s navigated myasthenia gravis while taking college classes. Here’s what the MG community has to say:
“Some days were hard. I missed a lot of days. I was able to finish by online classes. It took me more time than 4 years, but I finished.” – Monica
“Having a good group of people around you that you trust to help you in hard situations really helps.” – Jessica
“If you can, do it online. If you can’t, push through and make sure to take breaks if it’s needed. Definitely talk to the professor at the beginning of class. Don’t hurt yourself partying on the weekends, go to class, have some fun in between, get the degree, and just be proud you made it all the way through.” – Scottie
“I managed online. I did my PhD online in 5 years.” – Beth
“Having a good group of friends is essential. Without mine, I wouldn’t have made it through. Also, communicate with your teachers and the campus disability services early on… there are a lot of resources available that you may not know about.” – Peyten
“I just finished my degree in history! My biggest advice is to take naps and take breaks. Thank God for technology nowadays, as typing is so much easier than handwriting notes. There will be times you can’t take breaks… stay on top of those meds, eat decent food, and build in time after to sleep.” – Alexis
“I’d study with my head in my hands, holding my head up. I spaced my classes out. I built in a nap time.” – Lola
“Always, always, always advocate for yourself and prioritize your well-being.” – Erin
“Lots of support and slowlyyyyyyy.” – CJ
“Ask for the accommodations & start weekly therapy 😂” – Ashley
Resources for Education and Self-Advocacy
Asking for accommodations and educating teachers or friends can be challenging. MGFA offers some resources to help.
- What is myasthenia gravis? This page gives an easy-to-understand overview that you can share with anyone who needs to know how MG affects you.
- Talking about MG offers advice on explaining MG to friends.
- Effects of MG on Voice and Speech – this brochure can be useful if you experience bulbar weakness, as it explains why a patient might slur their speech, have trouble smiling, or exhaust their voice after relatively minimal use.
- Emergency Management for People with MG and Caregivers – this brochure can be shared with your school’s health office, your RA, and even your friends to help them understand what to do in an MG crisis.
- Consider joining a support group. MAYA is the MGFA’s platform for young adults. Join a virtual Zoom meeting monthly or be part of the Facebook group. The members are here to help, in college and beyond.
- There are scholarships for people living with a rare disease. Find out about several on the MGFA website.
- The Americans with Disabilities Act (ADA) protects people with disabilities from discrimination. The act is a law that has impacted many aspects of American life, including access to a fair and equitable education. If your MG symptoms are disabling, your college or university must work with you on accommodations. Accommodations could include extra time to complete an assignment, no grade penalties if you cannot speak easily in class, or a screen reader if you have double vision.
Be sure to talk with your school’s office of disability services to register your need for accommodations as soon as you get to campus or as soon as symptoms arise. Professors may not be allowed to give you accommodations unless your paperwork is in place. Use our educational tools to help your professors understand what you’re going through.